I spent a solid 16 years of my life in a ballet studio. Day in and day out I practiced the art of perfection, and relied heavily on the hope of someday making it to the big leagues. It was my dream for so long to dance professionally, and when the day came that my dreams changed my hope only grew stronger.
Hope has been a major part of my life for a very long time. Anywhere from the small hopes of getting an A on a quiz, to larger things like a cure for my mom's illness. It has driven me through the toughest times in my life. A small light at the end of a never ending dock, hope has guided me through almost two decades on this earth.
It's been ten months since the last time I was well, and I honestly can't tell you what it feels like to be healthy. Ten months isn't very long if you think about it, but it feels like ten years when one of your symptoms is chronic pain. I'm very lucky to have parents who go to the ends of the Earth for my health, so the process of seeing doctors and getting treatment has moved very quickly for such a zebra of an illness.
It takes time to find a diagnoses. First, you have to fix any blood levels that are even remotely off. I did that with my B12 and my Vitamin D, hoping that it was just a few vitamin deficiencies that were throwing my body off. When I didn't feel better after that first little "treatment", the fire of my hope dimmed a bit.
Next we looked at neurology. I had 19 tubes of blood drawn, several visits with a specialist, a sleep study, an EEG, and lots of disappointment. I felt like no one was listening to me and that the doctors were dismissing me as a whiny child. I have a vast knowledge of the human body and medicine for someone who has never been to medical school thanks to living with a doctor and my passion for science, so being ignored pushed me to my limits. My parents, of course, took into account everything I was saying and did their best, but I know it was the blind leading the blind for a bit there.
Blood work came back and I was extremely anemic. This wasn't a surprise because I hadn't eaten red meat in about a year and had some other issues. In my head this was it. Extreme anemia can cause so many problems and a couple iron infusions could get me back on my feet. My hope rose to bonfire levels!
I made it through recruitment at school and my final iron infusion and relapsed. I felt so awful and didn't know why. I prayed that it was because the iron was still trying to do it's job, but by that point I'd had enough Dr. Pepper-like liquid pumped into my veins I should have been at least a little better. Hearing that my iron levels were basically back to normal and that it wasn't the cause was basically like having the fire department put out the hope in my heart.
What was left was chronic fatigue syndrome and to find someone to help me. I felt hopeless for the first time in so long. Lost, I turned to writing to try to find the positives. Looking for ways to distract myself was all I could do. I waited while my dad contacted specialist after specialist to put some plans in place. All together I had a team of 7 doctors trying to take care of me. I needed my tonsils out, I started a new medicine that would take six months to work, I had an appointment scheduled with a rheumatologist, but all of that had to wait until winter break. That was half of a semester for me!
I did my best to handle myself. Mistakes were made, like trying to push myself to be as normal as possible. Relationships were strained.It's difficult to maintain any relationships as you approach the end of the semester, especially ones where someone is sick and only feeling worse. It's one thing to know of your friend or girlfriend's illness, but it's another to live with it and see it constantly. I know it's hard, and I don't blame anyone for finding it difficult to shoulder. If I can barely handle my illness, how are others in my life going to? By the end, my hope was barely the size of glowing embers.
I drew into myself and buckled down to finish the semester. I alternated between sleeping, studying at a coffee shop, and being forced by my boyfriend to take study breaks (lot's of comedies were watched) to de-stress.
I didn't feel like myself anymore.
Winter break came and I rushed home to have my tonsils out. Now, about a week later, I'm still recovering but I finally had that rhuematology appointment.
A doctor trusted with my mom's care and trusted by my dad, I went in with an open mind. I attempted to speak clearly and explain with as much precision as possible how my symptoms started, when, and exactly what they felt like. The doctor looked at me with intelligent and patient eyes, and when she spoke I was immediately at ease. She asked questions for clarity and even repeated the timeline of events back to me. I could see her mind working, but what came out of her mouth next actually surprised me.
Reactive Arthritis. A possible diagnoses. It's where an infection in the body triggers arthritis as a reaction. It falls in the family of spondyloarthritis, which is the other possible diagnoses she gave me.
Because I had a very rare gastrointestinal/vascular disease, now in full remission, I have damage. No one realizes how important your gut health is for the rest of your body, so when you have damage done to your intestines, it continues to show up. Even though I can eat normally and have gained enough weight for the compression sight to open up in my duodenum, my superior mesenteric artery syndrome still rears it's head in nasty ways. Malabsorption, damage to my immune system, and a very strong aversion to boost. Combined with the chronic mono infection, I was left with an immune system that can barely fight off a cold. This led to chronic fatigue syndrome
Hearing something that has actual treatment, research, and can be managed almost brought me to tears. It's hard to be given a diagnoses that has no hope. One where they give it to you because there is literally nothing else they can think of that would be making you feel this way. No cure, no real treatment, just attempting to live a sad quality of life. It's soul crushing and sucks all of the hope right out of you. Why even try to get out of bed and take my medicines when I'm just going to feel like this tomorrow? Hearing an illness that has actual treatments was a blissful experience.
She said a few things that really caught my attention while we were talking.
1. "Your immune system is literally trashed, it's not doing anything for you." thank you for confirming that for me. I thought I was going crazy because I kept thinking I had picked up every little bug that passed through the sorority house.
2. "taking your tonsils out was brilliant". I've been so worried that it wouldn't be worth it, but hearing her say that it was the best move was so reassuring. They could be a source of infection in my body and could be a major player in my health.
3."This can be put into remission." My heart soared at this! It's possible to help my body get back to where it once was! That doesn't mean it can't come back or flare. Just like SMAS, it never really goes away. You quell the beast to the best of your ability, and then try to maintain as much as possible so you can have a quality of life.
Quality of life. The thought of improving my personal quality of life makes my heart leap with pure happiness.
We put together a plan for an official diagnoses that makes sense and left me with a way to finally find some peace. I left with a little hope in my heart again.
To feel it's familiar, warm presence again was comforting. Something that had been lost for months was finally home again in my heart. Losing an ideal so important to me was hard. I felt like I had lost myself, that I wasn't "me" anymore. I know it's still going to be awhile before I feel better, but now I have something to hang on to.